Creating pathways for sharing data on Down syndrome
Data Management Core
['FUNDING_OTHER'] · CHILDREN'S HOSP OF PHILADELPHIA · NIH-10899519
This study is all about gathering and sharing important health information from people with Down syndrome to help researchers better understand their unique health challenges and find new ways to improve their well-being.
Quick facts
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | CHILDREN'S HOSP OF PHILADELPHIA (nih funded) |
| Locations | 1 site (PHILADELPHIA, UNITED STATES) |
| Trial ID | NIH-10899519 on ClinicalTrials.gov |
What this research studies
This research focuses on developing and maintaining data sharing systems to study a large group of individuals with Down syndrome. By collecting and harmonizing clinical, biospecimen, and molecular data, the project aims to enhance understanding of the health challenges faced by this population. The initiative will involve collaboration with stakeholders to ensure that the data collected reflects the needs and priorities of the Down syndrome community. Ultimately, the goal is to make this data accessible for researchers to drive innovative approaches and improve health outcomes.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals with Down syndrome and their families who are interested in contributing to a better understanding of their health conditions.
Not a fit: Patients without Down syndrome or those who do not wish to participate in data sharing initiatives may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved understanding and management of health issues associated with Down syndrome.
How similar studies have performed: Previous research initiatives focused on data sharing in similar populations have shown promise in enhancing understanding and treatment of associated health conditions.
Where this research is happening
PHILADELPHIA, UNITED STATES
- CHILDREN'S HOSP OF PHILADELPHIA — PHILADELPHIA, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: GUINNEY, JUSTIN — CHILDREN'S HOSP OF PHILADELPHIA
- Study coordinator: GUINNEY, JUSTIN
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page below.